Chapter 3 – Trust

CHAPTER FOUR

Beginnings

One afternoon I had had enough of working on testing Charlie’s game for a bit and I stopped to grab something to eat and another coffee. Cat was in, and she was also after some coffee, so we got to talking about the care home while we waited for the machine to finish brewing. Cat was a good bit older than me, and had left Dawkins House a few years before I did.

I remember you coming in as a baby” Cat told me, “and it wasn’t 17 years ago, so how come they made you sit the exam and then leave the home?”

You remember that?”

I do. I’ve always been interested in babies, although not enough to want one of my own just yet. I was about 9 when you came in, so I remember it well.”

I grew up fast, and when the council took over from the company they just didn’t believe me when I told them I was only 8, they said I was too well developed physically and too far advanced in my school work to be only eight years old.”

Well I can see what they meant by physically developed, you’re pretty filled out for someone your age, I bet you pass for a grown woman with no trouble.”

Well I have noticed men staring, it can be scary at times.”

Have you done anything about it?”

What do you mean?”

Well you can have some really good fun with them, leading them on. They’ll make real fools of themselves if they think you like them.”

Wouldn’t that be a bit cruel?”

Not if you do it right, and anyway, mostly they like it that way.”

I wouldn’t want to give anyone the wrong idea, it could be embarrassing”

Sometimes it can feel that way, but if you ignore it and go with the flow it can be really quite pleasurable, in the end. Is there anyone you fancy?”

No!” I said shocked, and I could feel myself blushing furiously.

Ooh! There is someone! Come on, you must tell, I won’t tell anyone else, you can trust me”

Charlie” I said very quietly, staring at my shoes.

What, Charlie Semaj? Wow, girl! You don’t half set your sights high!”

I nodded. “What do you mean about setting my sights high?”

Charlie isn’t easy, Rosie and I have both tried it with Charlie and neither of us got anywhere, and I know Rosie tried pretty hard with him. He’s too committed to his cause to be distracted by a woman, even one as good looking as you.”

I think he’s sweet, and he’s been helping me out. Besides I’m pretty sure he likes me.”

Oh, Charlie will help you out, he helps out me and Rosie too, he feels he needs to look after all the Hephaestus children.”

Hephaestus children?”

You know, people like us.”

From the children’s home?”

Not exactly, you’re probably too young to remember properly. Hephaestus was the company that ran our home until the council took it over the year before I left. The council took it over because of a scandal involving the company.”

I didn’t know that, what was the scandal? I thought they were better at looking after us than the council were”

I think so too, but the scandal wasn’t about how we were looked after, it was about how we came to be in the children’s home in the first place.”

What did that have to do with Hephaestus?”

They made us”

Made us?”

Made us, in a laboratory.”

That’s not how babies get born, even I know that.”

Oh, you’d be surprised. Hephaestus was a Genetic Therapy Research company, and they were supposed to be looking at ways to develop practical applications of the human genome mapping that was done at the end of the last century. Their mission was to find ways to cure various diseases both in embryos and in adults.”

Cat continued “They did experiments on human embryos, but instead of destroying them when they were finished their experiments they found young women, mainly university students to implant the embryos into, and when they gave birth the company took the children into care in the home we both grew up in.”

So that explains why the tutors taught us about genetics even when we were small” I offered.

Yes, they wanted us to be interested in the subject and to be able to understand what had been done to us when we were old enough to get it. I think they also hoped that they might get some new researchers in due course as well, especially as society seems to have turned against scientific ways of seeing things.”

Oh. What happened to them then?”

I’m not exactly sure, most of them seem to have been able to disappear pretty effectively. I did get some names from the official enquiry, and the press reported that some of them had been arrested. But they all got released on the bail, and it never came to a trial as far as I could tell. It was a bit difficult to find out.”

You said Charlie helps to look after the Hephaestus Children?”

Yeah, he does. I think he’s the oldest one, or at least the oldest one he knows about. He left the home and was officially an adult when the council took over, so he knows more about it than anyone else does. I picked up some bits when I was still there, but he told me a lot more when I officially became an adult.”

Why didn’t he tell me any of this?”

Oh, I don’t know, you’ll need to ask Charlie yourself. But he’s got a lot more paranoid and suspicious over the last couple of years.”

~~

The conversation with Cat had set my mind racing, I needed time to absorb it, and then I did some of my own background research to verify what she’d told me. It all seemed rather unbelievable, but the news archives bore out most of Cat’s story. Hephaestus had indeed been embroiled in a scandal about bringing genetically modified children into the world, the inquiry had suggested that there were hundreds of these children. There had been three children’s homes in Cambridge, with about forty children in total, plus an unknown number that had grown up before the scandal broke.

Who knows if there were more in other parts of the world, they were a global organisation. The Hephaestus workers had deliberately destroyed all the records, or perhaps never kept them in the first place, so the inquiry had never been able to get to the bottom of exactly how many children had been born. Many of the key players seemed to have been overseas, and a number had even moved into orbit.

Reading further into it, I was blown away by the scale of it. As well as doing research Hephaestus had been offering therapy at a private clinic. The therapy was billed as ensuring your child was ‘Genetically Perfect’ and would be free from genetic susceptibility to a wide range of conditions, including cancers, and would also be above average in terms of intelligence and rate of developing.

It all left me confused. Was I some sort of freak? Certainly that seems to be what the news media at the time had suggested, along with a good number of the commentators. For once, I was grateful that the staff at Dawkins House had shielded us from the public reaction to our existence.

A Parliamentary inquiry was set up to investigate what had happened and what lessons could be learnt. The executive summary of this was that Hephaestus was set up using capital from an unknown billionaire, which had been paid in cash and was effectively untraceable. All of the academics employed were appropriately qualified, they were mostly post-doctoral and had studied at good universities, many had published well cited papers and it was clear that they were on the cutting edge of research in their field.

From those that had been around to testify, it was clear under cross-examination that they had a poor opinion of how the public could understand what they were doing, or how much they were contributing to the overall well-being of humanity. The judge leading the inquiry (Lord Justice Maitland) didn’t buy much of this, he was a strictly anti-science sort, so the outcome was pretty obvious from the start. Even when he was fed the absolute truth by the guys that gave evidence he quite often discounted it as unbelievable.

The inquiry couldn’t believe that Hephaestus’s promises about their genetic therapies would stand up to the test of the Trades Descriptions Act, and described them as “pernicious and cynical attempts at fear-based marketing to make vulnerable young would-be parents part with their money”. However I noted that the inquiry couldn’t find a full list of those that had been ‘duped’ by this marketing scam. Of those that the inquiry had managed to track down there were none that they could positively identify as having had birth defects of any kind, nor were there any court cases against the company by its customers.

Here’s an example of the testimony from Dan Friend, the Chief Strategist at Hephaestus Genetics who was one of the company’s founder members.

Houses of Parliament, London, 23rd June 2045

Clerk to the Inquiry: Mr Friend is testifying through a video link, Your Honour.

[to the screen] Mr Friend, can you please put your hand on your bible and repeat the oath after me?

Dan Friend: I’m an atheist, but I am ready to swear the oath.

Clerk: Okay, we can use that version of the oath

[the oath is sworn]

Maitland: Mr Friend, thank you for appearing before us today. I would like you to please tell us in your own words what your role in Hephaestus Genetics is?

Mr Friend: Your Honour, I was one of six founding members of the company, and have been with it since it was formed. My job title these days is Chief Strategist, and I have been responsible for providing advice to the company’s board on matters of corporate and business strategy ever since it was formed. However, I have an exclusion in those provisions for matters relating to the direction and methods of medical research as that is the province of my colleagues, currently Doctors Sumaiya Czarnoski and Sarah Jackman are the board members responsible for medical research direction and methods respectively. In the early days Dr Gert Gray held that responsibility.

Maitland: Could you just explain your role a little more clearly please?

Mr Friend: Well I am responsible for the corporate business plan, developing strategic options for how we market the products that we develop, and the sort of partnerships that we need to ensure that we can bring those to the market.

Maitland: I see. Can you please tell me how well informed you are about the activities of Hephaestus Genetics?

Mr Friend: I believe that I have an overview of almost everything that Hephaestus has done over the life of the company. I couldn’t speak in any great detail on the technical matters of the research, I’ve got an MBA not a Doctorate in Genetics, but I know the sort of things that we’ve worked on and what we’ve successfully developed to bring real treatments to the public.

Maitland: So how would you characterise the activities of Hephaestus Genetics?

Mr Friend: Well, publicly, our company purpose is to develop clinical applications for genetic therapy based on humanity’s understanding of its genome. I think that’s pretty much what we’ve done. Hundreds of thousands of people have benefited from our therapies that have protected them from cancer, and thousands of mothers have had children that don’t carry the genes that would have given them a debilitating condition with a drastically reduced life span.

Maitland: I notice that you said ‘publicly’. How would you describe the private motives of Hephaestus Genetics?

Mr Friend: Well, there are the usual individual drivers of each of the shareholders and of the board, which would vary from person to person. Some of them are just interested in making money, and others are in it for human welfare or other reasons. I’m not sure I can give you a general answer, the public answer is simply what we all agreed on, and forms what most people in the company would work to.

Maitland: What other drivers are you aware of, specifically amongst the more significant shareholders?

Mr Friend: Well, when we were discussing setting up the company a good number of the initial employees, who are all also shareholders, came from the Mars Exploration Society and were interested in how you could help people to survive on Mars, and away from the sort of serious medical assistance that we sort of take for granted on Earth. There were conversations about the sort of things that you would need to be able to deal with, like cancers, birth defects, bone and muscle deterioration rates and that sort of thing. There were also conversations about whether or not you could select for faster reaction speeds, or better situational awareness. However, the steer from our original angel was that we needed to focus on something that would pay the bills. Which is why the first thing we developed were the genetic therapies to prevent some of the more common cancers, which got us a clear benefit for humanity and ensured that the money would keep coming in to pay for the future research programme.

Maitland: Thank you, Mr Friend. I’d like to change tack a little to ask you about the activities of Hephaestus Genetics that caused us to be here today. You said that you had a good overview of all of the activities of Hephaestus Genetics, so were you aware of the children’s homes much before the story became public?

Mr Friend: I was. In fact if you read the corporate business plan you’ll find the details in there, we never made a great secret of it, despite what you may have read in the press.

Maitland: According to your published business plans you were operating at least one children’s home since 2031, but that you listed this as part of your contribution to corporate social responsibility, for which you received tax relief.

Mr Friend: Yes, that is substantially correct. One of our research fellows at the time believed very strongly that we needed to be involved in the local community and play our part in making life better for the disadvantaged. So we sponsored a local children’s home and staff volunteered to provide enhancements to the care, fund raising, helping with adult supervision on trips out, providing tutoring for the older kids, that sort of thing.

Maitland: So when did you move from enriching the lives of disadvantaged children, to adding to their numbers?

Mr Friend: At no point did we add to the numbers of disadvantaged children.

Maitland: Let me put that a different way. When did Hephaestus Genetics start using the children’s home to look after babies that it had unlawfully created?

Mr Friend: I don’t know exactly, it was done by the research operations team which was outside my remit.

Maitland: So when did you become aware that Hephaestus was carrying out unlicensed research and that it was breaking the law by implanting embryos into young women?

Mr Friend: I first became aware of the details of the research about ten years ago, but the legal advice that I saw at the time suggested that it was all perfectly legal and above board. As I said earlier, it all features in our corporate business plans that were in the public domain. I don’t see why we would have published something that we were doing unlawfully, and certainly none of the Directors would have signed off on something that we knew for certain was breaking the law. We went to some lengths to ensure that what we did met with legal approval, and we even moved activities that some states were uncomfortable with to different jurisdictions where we were assured that it was legal. So in summary, the first time I had any suspicion that we might be acting unlawfully was when this inquiry was announced, and even then I sincerely hope that you find that we’ve been doing things within the letter of the law, and within the approvals that have been granted by the relevant authorities.

Maitland: That is certainly an interesting perspective Mr Friend, are you in a position to be able to substantiate it with evidence?

Mr Friend: As I understand it Hephaestus Genetics made a deposition to you yesterday with certified copies of the various bioethics committees approvals for the research that we did, with the detailed methods attached. We have also made those publicly available for third party validation.

Maitland: Thank you, Mr Friend, no more questions for now.

 

Continued…

Chapter 5 – Discovery will be published on 18th October 2013.

If you cannot wait, get Perfects on your kindle for 99p.

 

Enhanced by Zemanta